Dementia Care: Caregivers Living Well with Dementia Patients
A diagnosis of dementia can bring fear and discouragement to a family, especially to the one receiving the diagnosis and the one designated as the caregiver.
Although days of uncertainty lie ahead, it is possible for people with dementia to live well and continue to do their favorite things, according to Dr. Maribeth Gallagher, the dementia program director for Hospice of the Valley in Phoenix, AZ.
Stigma and shame are still attached to a dementia diagnosis. But Gallagher, a national expert on dementia, said that resources and education are breaking down the stigma and “taking the shame away from a dementia diagnosis.”
What is Dementia?
Dementia is a broad term describing diseases and conditions that involve loss of memory, thinking, problem-solving, and other cognitive skills. Unfortunately, older adults who forget things at times fear that they have dementia. Forgetfulness is a normal part of aging, but dementia is not a natural part of aging.
Dementia is caused by damage to brain cells. The damage prevents the cells from communicating with each other and this affects normal thinking, behavior, and feelings.
Alzheimer’s disease is the most common cause of dementia and accounts for 60 percent to 80 percent of dementia cases, according to the Alzheimer’s Association. Other types of dementia include vascular dementia, Lewy body dementia, and Parkinson’s disease.
Symptoms of many dementias begin slowly and gradually become worse. For instance, people with dementia can communicate in the early stages of the condition but may have difficulty finding words to use as dementia progresses.
The Alzheimer’s Association says an early dementia diagnosis allows an individual to get the most benefits from treatments available for the specific type of dementia.
Living-Well Tips for Family Caregivers
Family caregivers usually pushed into that role and are not prepared for the task, said Gallagher, who found herself thrust into the caregiver role and is now helping people in the same situation.
While there is a struggle at first, caregivers and families can learn how to handle the challenges and help their loved ones live well. Gallagher offers the following tips to get started:
1. Educate Yourself About Dementia
Caregivers are encouraged to learn as much as possible about dementia, particularly the type of dementia with which their loved one was diagnosed. National organizations, such as the Family Caregiver Alliance and the Alzheimer’s Association, have books, online training, helplines, and other educational resources available for caregivers. These organizations can also connect families with local support groups.
2. Anticipate Your Loved One’s Needs
Older adults have the same needs they had prior to receiving a dementia diagnosis but will have more trouble getting them met because of their dementia.
So, caregivers can learn to develop skills that anticipate their loved one’s needs by asking questions, such as:
- What is it that you need?
- What brings you comfort in body, mind, and spirit so I can help to improve your quality of life?
- What makes you feel seen, heard, and valued?
- How can I care for you physically that would help you to be the best you can be?
Gallagher describes caregivers as “experts” when it comes to knowing the needs of their loved ones and what gives them comfort and a deep sense of belonging.
3. Establish a Support System
A team of family members or close friends to share in caregiving duties provides primary caregivers with added support. Caregivers often feel alone and abandoned because they carry out the daily responsibilities of care.
A support team will not only share in daily duties but can help caregivers avoid stress and burnout.
Caregivers need emotional, spiritual, and mental support, just like their older adult family members. A supportive community can make a positive difference during this time.
Some types of dementia symptoms may be reversible depending on what caused the condition. However, many dementia symptoms worsen over time and further affects the older adult’s ability to function.
Caregivers and their families who use the available educational resources and maintain a support team will be more prepared to handle future challenges facing their loved ones living with dementia.